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Chiari Malformation Community
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Did the radiologist miss a possible Chiari?

I have had a lot of symptoms for a long time and I can't get the doctors to listen. I have seen 8 of them. I am almost always told to see a therapist. My problem isn't mental! I have a physical condition! I finally got a doctor to do an MRI, but the radiologist didn't mention anything about Chiari and I specifically wanted to be checked for it. My symptoms are, severe brain fog, muscle twitching, headaches, a black curtain falling over my eyes, memory issues, dizziness and vertigo. I have more, but I can't think of them right now. Here is a link to my MRI pic http://s58.photobucket.com/user/Cindy12359/media/Mobile%20Uploads/IMG_20160731_090134533_HDR_zpsa0gbwgqh.jpg.html?filters[user]=145462754&filters[recent]=1&sort=1&o=0


Any thoughts would be great.
6 Responses
620923 tn?1452915648
COMMUNITY LEADER

Hi and welcome to the Chiari forum.

Radiologists many times only report to what they were asked to look for....I had one that went above what he was asked and Drs dismissed it as the radiologist being over reaching....

Do you have Chiari, to that I can not say, but it looks like the cerebral tonsils are herniated....not being in the medical profession I can not look at your MRI and say if it is congenital Chiari or acquired low lying tonsils due to some other issue.

Since you have the MRI, send copies to Drs that specialize in Chiari and may be able to shed light in it for you.
1 Comments
I will.
Thanks
620923 tn?1452915648
COMMUNITY LEADER

  Do you need  names of Drs to research? If so, let us know what area you are in....we have a  list that is helpful in starting the research on Drs.
1 Comments
That would be great. I live in Oregon.  I've looked around online, but it seems like most of the specialist are in New York.  They will give me a second opinion,. However, if I do have Chiari, it's not like I could go that far for an appointment.
Thanks
1306714 tn?1327257080
Cindi323
I am hoping for the best for you and I know exactly how you are feeling right now.  I did have surgery 6 years ago ,but now I'm dealing with other issues such as kidney failure, seizures, I've been in the Pch. ward because yes they thought I was nuts.  I did have very low potassium, and sodium levels which caused memory loss and not able to walk. I ended up having nothing wrong with me not over medicated which they thought maybe that was what was happening, as you I kept telling them . "I'm not crazy, there is something wrong with me".  They now diagnosed me with somatic disorder which simple terms they believe something is wrong, but they don't know what. I just went to my 2nd disability judge apt, and praying for a better outcome this time. They let my husband testify which was really important because he has been the one picking me up off the floor.  As a friend once told me and I will tell you now, don't give up.  You know your body and yourself and you know something is wrong.  You will find the right Dr. to listen to you and find the answers.  Your in my prayers and wishing you the best.
1 Comments
Thanks that helps. I wish you the best! Have you had an MRI?
620923 tn?1452915648
COMMUNITY LEADER

  Here is what we have for your area...keep in mind these Drs may not be true Chiari specialists but, they have treated it...members list names of Drs they have been to, treated by and liked....so the list is not meant to be a referral nor an endorsement of those listed it is meant to be used as a tool to research Drs.


OREGON

Dr David Adler
Emanuel and Providence
Colunbia Neurosurgical Assoc.
1040 Northwest 22 nd Ave.
Portland, OR
(503)796-2743

Dr. Yashail  Vora
Mt. Talbert Medical Office
10100 S.E. Sunnyside Rd.
Clackamas, OR 97015
503-652-2880

Keep in mind many of us do travel to get to a Dr.....even out of state.
1 Comments
Does insurance typically cover a doctor out of state?
620923 tn?1452915648
COMMUNITY LEADER

  It depends...there are many NS's that do not participate with INS....but when it comes to surgery most of the costs are covered....even if you go out of state....do check with your INS ahead of time to know for sure what is covered and what is not....I went out of state and I was able to cover the costs not covered by INS ....
1 Comments
I just assumed most insurance companies wouldn't cover out of state care unless it was an emergency. I will call mine and check.
Thanks
620923 tn?1452915648
COMMUNITY LEADER

  It can take a bit more careful examinations of the numbers and state they report the claim to....I had BC BS and they sent it to NY instead of PA...once that was fixed I had the anesthesiologist sendng it to a wrong number and even after telling them whomever was sending it via computer once it automatically filled in they did not look at the numbers and the auto fill in was again a wrong number...they only contacted me once, then sent it to collections....since I recorded info of when, and whom I spoke with and what the issue was, I was not responsible for the mix up and they ate the cost over 10 thousand $.....

And I only had my typical out of pocket and deductibles to pay.....contacting your INS carrier is best to know just how this will/can work.
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620923 tn?1452915648
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